My Heart is Broken

RIP Bella Current 07/2010~09/19/2014

Today we said goodbye to my baby, my constant companion, my Bella. We had to finally make the heartbreaking decision to help her cross the Rainbow Bridge after an almost two week battle with a severe back injury. We tried everything we could afford to do (and some things we couldn't) to save her but over the last few days, as her condition deteriorated, we had to face the truth.....her time had come. 

I brought my Bella home on my birthday in 2010. I adopted her from a coworker that could no longer keep her and saved her from being sent to the pound. Ever since that day she was my constant companion. She loved me unconditionally, as only a dog can, and I loved her just the same! When I got sick in 2011 she was always there (except during my 8 day ICU stay...although we tried to smuggle her in to see me but failed)....cuddling me, licking me......after my neumerous surgeries she just knew where she could and couldn't lay or step on me to avoid my stitches and drains. I have always maintained that she was the reason I kept going during that dark time! During these last 4 years she has made me smile, laugh and experience a love I never thought possible. I couldn't have loved her any more if she was one of my human children!

Today she is gone and a huge chunk of my heart went with her! The house, like my heart, feels empty. Lying in bed without her cuddled up against me feels like a knife in my gut....I will never again feel her soft fur against my skin, I will never again hear her sweet bark as she greeted me when I returned from running errands, I will never feel her tiny tongue lick the tears from my face when I cry, I will never again see her bright eyes light up even more than normal when I walk into a room. I feel empty and alone! I begged God to save her, to heal her and let her be with me for years to come. My begging and cries, sadly, were not answered......I don't blame God though.....I blame myself!

Since the day I brought her home I was always paranoid about her hurting her little back but I NEVER did anything to prevent it from happening. I didn't teach her not to jump on or off the furniture, I didn't teach her to not stand on her hind legs when she begged for her dinner, I didn't teach her to not try and jump into my arms.....in fact I thought it was cute and encouraged it. I feel like I killed my baby! The outcome after the injury was inevitable but there were so many things I could've done to prevent the injury to begin with and I didn't.......she counted on me to protect her and I let her down in the worst possible way! 

I love her so much and I will love her till the day I die! That sweet little face stole my heart from the moment I saw her and now that face is just gone forever.....I don't even know where to go from here! I miss her with every fiber of my being and always will.....

Bella I am sorry I failed you! I am sorry you had to suffer in excruciating pain for days because of my selfish desire to keep you with me! I tried to save you in every way that I could and I hope as you're romping in Heaven, pain free, with all the other puppies and kitties that you remember that I am your Mommy and I love you to the ends of the earth! I will NEVER forget you and can't wait to be with you again someday! Please forgive me and know that I am so very sorry! I love you my baby....ALWAYS AND FOREVER! Please tell Sasha, Princess and Simon that we love and miss them too and please don't forget us.......God I miss you so!

Why?

Why do I keep setting myself up for failure and heartache? Why do I put so much effort into relationships with people that just let me down? Why do I always put myself last? I'll tell you.....it's because I'm weak, gullible and give my love and trust far to freely. That's why!

All my life I have been the fixer, the giver and if I am being honest, the "doormat". Whenever anyone I cared about needed something I would do anything to make sure they got it. Whether it was simply companionship, money, a place to rest their head for a spell or material things I would do everything and anything in my power to provide. There were many, many times I went above and beyond and subsequently went without so that my "loved one" would have what they needed or wanted. Even after I got sick, lost the ability to work and didn't have any income I still managed to find ways to help those I love. I just figured that the more I helped people the more help I would get when I needed it.....good karma and all.....I guess I was really just being naive because all I've gotten in return, in many cases, is bitter disappointment. I did learn some valuable lessons along the way. I learned that a lot of people out there are disgustingly selfish and that I am just about as stupid and gullible as they come! Let me explain.....

Over and over again I have fallen for the same old lines.....I have allowed myself to be guilted into doing things I couldn't afford to do, I have been lied to, stolen from and just generally taken advantage of and I LET IT HAPPEN! Even after some of those people went out of their way to talk shit about me and my family when I did nothing but try and help them in their time of need! I am not completely ignorant, most of the time I knew exactly what was going on....nine times out of ten I knew when I was being fed bullshit and lies but continued to be try and be the "fixer" anyway. Why?? Because I am a pushover with a big heart. I wanted to believe that people who claimed to love me couldn't and wouldn't use me. That they wouldn't go out of their way to take advantage of my kindness and then throw me away when I was no longer of any use to them.  In the end I believed that regardless of their actions or words against me I was, at very least,  establishing that good karma I referred to earlier and that it would all be worth it in the end. As it turned out all I was doing was enabling others to continue to use and abuse me. In reality I was gullible and just fucking stupid!!!! In my defense there is also the fact that I have always subscribed to the practice of "my word is my bond". If I promise someone something I am going to keep that promise no matter what it takes, even if the person didn't truly deserve my help or my loyalty, because it's a PROMISE dammit and I am going to be true to my word even if I have to, figuratively, move mountains or go without things that I need to accomplish it. What I have really figured out in all of this is that, evidently, I am a rare breed. Words, it seems, mean nothing in this age of perpetual selfishness! Now, I am not going to sit here and claim to be perfect. Not by any means!  I have made promises that were unable to be kept, I am only human after all, but the difference is I will always give a valid and truthful reason as to why I cannot keep that promise. I would never insult someone's intelligence by lying to them nor would I degrade myself by doing so. I want people to be able to trust me, I want my friends and family to know that I will keep my word and if for unforeseen reasons I can't manage it that they will get an honest explanation as to why. I won't avoid them for as long as I can and then, when finally confronted, lie to cover my own ass. I will always own my mistakes and oversights.....as I said I am only human and therefore flawed, but I would be the first to admit that and take responsibility for my actions or lack thereof if that is the case. 

I suppose the biggest lesson I have learned is that there are only a few select people in this world that I can truly trust. My husband and kids, of course, and a SMALL number of friends, you know who you are, and family members. Everyone else is seemingly in it for what they can get out of me and those are people I need to extricate from my life. Honestly I have nothing left to give to anyone that doesn't deserve it and it's time for me to finally put myself first.....I do however have immeasurable amounts of love, empathy and understanding to give anyone that wants it. That costs me nothing to provide and I will give it willingly and without question to anyone that proves worthy!

The bottom line is that I can no longer be the "fixer". If you want to be a part of my life that's fine, I will gladly accept you into the fold.....but just so you are aware ALL you will get in that deal ME and my unwavering love and friendship. If that is not enough for you then you can just FUCK OFF! You can't squeeze blood from a turnip, as the old saying goes, and from now on you can call me the turnip......I need to focus on me and my little family (blood and chosen) and that's just how it's gonna be from now on!

So if you are reading this and are one of my trusted friends or family please know that I love you with all of my heart and NONE of this blog pertains to you. You have earned your place in my life by simply being there for me when I needed you and expecting nothing but love in return! However, if you are reading this and any of the above statements made you feel guilty or made you feel like you need to apologize to me your bridge is already burnt so don't even bother.....just move on with your life and forget I ever existed because, honestly, you no longer exist to me!

Thanks for taking the time to read my rantings and have a blessed day!

Feelings.....

Over the last three years my life has become a nightmare. I feel sick every single day, I am in some sort of pain 24/7 be that physical, emotional and even spiritual at times. Every day my existing symptoms seem to get worse and new ones are popping up at an alarming rate. 

As I write this I am suffering from a flare up of my pain symptoms along with horrible insomnia and an obnoxious case of nausea. It never seems to end and always comes in groupings of multiple issues all at once. I am at wits end! On top of all of it I am falling into another depression.....

I feel lonelier than I have in a very long time! I used to think some of my friends were right, that I ostracize myself and have become anti-social by choice but I have realized that that reasoning is completely off base. It's an excuse that my "friends" have come up with to make themselves feel better about abandoning me! I know that sounds harsh but I can't find a gentler way to put it......more importantly I refuse to accept excuses anymore! If someone truly wanted to be my friend they would make time for me, they would text me, they would call me.....Now, I realize that people have lives, jobs, kids and such but even when I was working 60-70 hours a week in retail, managing a household, taking care of my kids and squeezing in some time with the husband I still managed to make time for my friends who have always been very important to me! I would drop everything if someone needed me and I guess I just expected that people would pay it forward. There are a few people who have made the effort and to those people I am eternally grateful! However, if you have to ask me if you are one of those people then I'd say the answer should be pretty obvious! These very special people are my nearest and dearest friends and I know that even with their tremendously busy daily lives they would drop anything and everything to be here for me if I needed them. They, most definitely, already KNOW who they are because I have told them and made a point to keep them in my life! Over the last few months I have been removing myself from contact with those that have proven themselves to be less than "friendworthy". I do not judge these people nor do I feel any anger or resentment towards them! I have just gotten to a point in my life where I need to be selfish and put ME first. I am needing to surround myself with friends that truly WANT to be there for me through my darkest times......not just when all seems well or when it's convenient for them or when acting like they care makes them feel good about themselves.....I need a real support system and that is what my focus is now, finding kindred spirits that understand my struggles and want to help in any way they can simply because they truly care about me! 

I want to take the time to reiterate that I have some very special people in my life who I know would do just about anything for me (and I for them) even if it's just sending a simple text message asking how I'm doing and, more importantly, actually wanting to hear the answer whether it's good or bad! To those people, and you know who you are, I love you and could never get through any of this without you!!! I will value our friendship in this life and in whatever comes after!

 

I started writing this a few days ago but in light of today's tragic loss of Robin Williams to suicide I feel getting my thoughts and feelings out there is even more important. I have been lost in the darkness more times than I'd like to admit over the last three years. There were, and still are, many nights spent awake and in pain, physically and emotionally, when the thought of just ending it all has crossed my mind.....the only difference between me and the millions of people who have lost their battles with depression is that I made the decision NOT to act on those thoughts and feelings! How easily it could've gone the other way.......and if I am being honest the ONLY thing that kept me from taking that one last drastic action on those lonely nights is the knowledge of what it would do to my husband and children. My husbands father committed suicide when Brian was just 18 years old and, although I didn't know the family at the time, I have firsthand knowledge of what his actions put the family through. What it still puts them through to this day! I will not do to my boys what was done to my amazing husband and his sister all those years ago and I will not make my husband live through that kind of pain ever again! I guess in a way I am lucky to have the understanding that I do......it has made me more aware of what something like that really does to a family and that awareness has made me want to fight my inner demons instead of giving in to them. That said, I know all too well how easy it would be to give in. How easy it would be to find justifications for that action. How easy it is to say "they'll all be better off without me...". There are many nights I've cried myself to sleep begging for death to take me in my slumber because the physical pain is just to great!

 

These years have been hard and it seems to be getting harder every day but I have learned something about myself as well......I have learned that I am a fighter, I am a survivor and I am much stronger than I EVER gave myself credit for! I have made the conscious decision to see this through no matter where it takes me or how hard it gets. If I do eventually lose the battle it will be because my body gave up NOT because my spirit did! So many have given up and it grieves my heart....I just pray that Robin and all the other souls have finally found the peace they could never find in this life! And if anyone reading this right now is considering opting out please reconsider......call someone, ask for help....there is nothing to be ashamed of! There are people out there who care about you and need you in their lives. I know things seem helpless now but I promise there is help, hope and love out there for you......just ask for it and you'll be surprised by what you find!

Alone

My body writhes in agony

And no one seems to care

I pray for some acknowledgement

But very few are there

I cry on social media

Just looking for compassion

But most people only care about

Celebs and the latest fashions

No one really understands

The reasons for my pain

Some doctors even seem to think

I am simply going insane

All I truly want right now

Is a real diagnosis

Someone to say that this is real

And not just some psychosis

All the hope and optimism is 

Slipping through my fingers

I feel the fear overtaking me

And the anxiety just lingers

I wish I had a magic wand

To make this disappear

The chronic pain, anxiety

And most of all the fear

I beg for understanding

From my friends and family

I am not a hypochondriac 

How can I make them see

Some days are better than others

But regardless I am sick

Some days I can't do anything

It's not a lie or a trick

Just because I don't look ill

Doesn't make it nonexistent 

I assure you it's inside of me

And terribly persistent

So when you see me looking well

And trying to be included

Don't assume that I am better

Or that I was just deluded

I have a few close family and friends

That come by or call on the phone

I thank God everyday for them

Because without them I'd be utterly alone

 

Justice for WM3? If Only....

In August of 2011, after 18 years and 78 days inside prison walls, the trio of Damien Echols, Jason Baldwin and Jesse Misskelley Jr, known as the West Memphis Three, were released after taking what is called an Alford Plea. This rare type of deal basically boils down to a glorified "no contest" plea while being legally allowed to maintain your innocence and, most importantly, allows for an immediate release from custody based on time served. I was not surprised by this development, as many were I've been told, because had I been in a similar position I would've taken the deal in a heartbeat. That said, this deal was not justice. The fact that these three men, who I believe to be innocent, had to stand in a courtroom and plead "guilty" to three counts of first degree murder each in order to obtain their freedom is disgusting and a slap in the face to everyone that believes in true justice and liberty. This is not how the system is supposed to work! 

Let's go over the basics of the case in the simplest possible terms. In May of 1993 the bodies of three 8 year old boys were found in a canal near their West Memphis, Arkansas neighborhood. They had gone out riding bikes the night before and never returned. Christopher Byers, Michael Moore and Stevie Branch had been brutally murdered. They appeared to have been beaten, cut, scratched, bitten and one boy had been nearly castrated. All three victims had been stripped naked, hog-tied with their own shoelaces and thrown into the water. The two bikes they had been seen riding the night before were also in the canal and their clothes had been stuck into the muddy bottom with sticks. It was an obvious attempt to conceal a horrific crime. I can't even begin to imagine what those poor police officers were feeling as they plucked those tiny bodies out of the water one by one. I have seen the crime scene photos and those images have been seared into my memory. I will have those pictures in my mind until the day I die, as I imagine they are forever in the minds of all who have ever seen them! Almost immediately following the discovery of the bodies rumors started flying around the small town and it didn't take long for "Satanic Panic", as the FBI called it, to set in even though the killings had no ritualistic connotations whatsoever. Local law enforcement clung to this theory and began looking for anyone that fit their definition of possible suspects. They very quickly zeroed in on Damien Echols. Why? Because he dressed primarily in black, listened to heavy metal music and had an interest in the occult. They manipulated a mentally retarded Jesse into giving a false confession after 12 hours of interrogation that incriminated himself, Damien and Jason. They accused Jason simply because of his association with their primary target, Damien. This is when the case took a dark turn and went from trying to find the killer(s) of three innocent little boys to a modern day witch hunt. 

Damien was a "goth kid" before it was cool. During the early to mid 90's the gothic subculture had been catapulted into the mainstream culture with the introduction of bands like shock rocker Marilyn Manson, White Zombie and many others. I myself found kindred spirits in this group and spent a decent chunk of my early teens as a "goth". It was really nothing more than a fashion choice. I was not a "Satanist" although I, like Damien, took an interest in all things Wicca for a period of time. I, like Damien, had and have a love for heavy metal music, horror movies and Stephen King novels. None of these things are illegal! None of these things signify that one is unstable! None of them make someone a killer! All of the supposed evidence of guilt submitted during Damien and Jason's trial in 1994 was simply evidence of teenage boys being teenage boys in the early 1990's, nothing more! There was NO physical evidence linking any of the three young men to the crime scene and each of the accused had multiple alibi witnesses for the time that the murders took place but no one cared. As far as this small town, nestled in the heart of the Bible Belt, was concerned they had their murderers and no one was gonna tell them any different! Every "expert witness" the prosecution put on the stand had credentials that were questionable at best and it has since come out that many of the prosecutions witnesses claim to have been threatened or coersed into testifying against Damien. One such "witness" recanted her testimony in 2007 claiming that the police  "scared her to death" and gave her immunity from her own legal troubles if she would help get information on and from Damien and Jason. Another "witness" who testified that Jason confessed his involvement in the murders to him while they were in a juvenile detention center together has since said he flat out lied on the stand to gain immunity from his own legal issues. I could go into a lot more detail regarding the original trial and it's many glaring errors, including the allegations of juror misconduct, but as I am trying to keep this as simple as possible I won't. If you are interested in those details I would urge you to go online at WM3.org, watch the Paradise Lost documentaries or read Mara Leveritt's book Devil's Knot.

So what really happened on that spring evening in 1993? Honestly, and sadly, we will probably never know. The state has taken the position that the case is closed and therefore they have no intention of reopening it or investigating other potential suspects. However I believe that the simple fact is this, if the state truly believed that Damien, Jason and Jesse were guilty of these murders they would never have agreed to any deal that would remove Damien from death row much less allow all three to walk free but that's exactly what they did. They know they were wrong but in order to save face (and prevent a multimillion dollar law suit) they cut the deal! I have my own theory on what really happened that night and without pointing fingers or accusing anyone specific here it is:

Stevie, Christopher and Michael headed out on their bikes around 3:30pm with the understanding they had to return by 4:30pm as Stevie's mother had to leave for work by 5pm. They obviously lost track of time and did not come home as scheduled. Stevie's stepfather took his mom to work around 5pm then returned to look for the boys. By this time the parents of all three children and other members of the community were searching the general area. I believe that someone involved in the search and personally invested in at least one of the children found them playing somewhere in the neighborhood and got angry that they had not returned home when they'd been instructed to. This person probably scared the boys with their anger and the kids subsequently took off on the bikes. The angry searcher most likely followed them into the woods, known as Robin Hood Hills, and caught up with them by the canal. At this point the perpetrator is furious and probably struck one of the children in his/her anger. This would have terrified the other two boys and I assume they would've tried to run and hide but as we know 8 year olds wouldn't get very far when scared. I believe the aggressor did not intend to kill the boys when he/she entered the woods that night but that in his/her anger the situation got out of hand and the first death was accidental. This left the perpetrator with two options: turn themself in or eliminate any witnesses and cover up the crime. Obviously, and tragically, they chose the latter! The manner in which the bodies were found, bound and hidden, and the manner in which the bikes and clothes were found, also hidden, points to a desperate attempt to cover up a killing of unspeakable proportions. I believe that this person then, after cleaning themselves up, returned to the search effort with no one the wiser. I believe that this person is still walking the streets and has allowed three innocent men to take the fall for a crime they didn't commit for over 21 years. I want to reiterate that I do not believe that this was necessarily a premeditated murder. As I said before, I believe the first death to be accidental due to extreme rage and the other two victims were simply in the wrong place at the wrong time and could not remain alive as they bore witness to the beating that caused the first victims death. A criminal profiler hired by the defense, after reviewing the case file, called this a "personal cause homicide" meaning that the perpetrator had a personal connection to one or all of the victims. Neither Damien, Jason or Jesse had ANY connection to any of the victims or their families other than living in the same town. Before you ask, I do have my own personal theory as to who the killer is but I will not divulge that information as I do not want to open myself up to potential lawsuits or, more importantly, do to someone else what has been done to the WM3 by making assumptions and unmerited accusations.

As a parent of two young boys I understand that this case hits us where it hurts. I understand that emotions run high and tempers flare when discussing the brutal murders of innocent children but does that give us the right to rush to judgement? Does it give us the right to condemn someone to death with no evidence to back it up? No it does not! This case was obviously botched on almost all levels. The community, the police and the media rushed to judgement based on nothing more than what Damien looked like and that he was the "weird kid" in town. They judged Jason on nothing more than the friends he kept. They took advantage of Jesse's limited mental faculties and got him to say things that weren't true and didn't even mesh with the facts of the case. Everything law enforcement did was wrong! Evidence was lost, persons of interest weren't questioned, neighborhoods weren't canvassed and unrelated items were used as trial evidence.....wrong, wrong, WRONG! 

I pray that one day someone that knows what really happened that night will find the courage to come forward. That they will find the strength to fight through their fear and help clear the names of three innocent men. I pray that someday the real killer will come to justice and that everyone will finally know that our guys have been innocent all along. Because until that day true justice will never been known...

(Disclaimer: I am not a member of the press, a member of law enforcement or directly affiliated with any entity or organization. I am just an avid WM3 supporter and have been since 1994.)

A Poem for Invisible Illness Awareness

Just because you can't see it

Doesn't mean it's not there

So don't stand in judgement

Don't say you don't care

So many diseases 

That cannot be seen

But denying their existence

Is really quite mean

The people who suffer

Including myself

Need belief and acceptance

We're crying for help

The pain that we live through

All night and all day

Is something we hide and

Don't put on display

We live in the shadows

Keep friends in the dark

Mask our pain with fake smiles

It's no "walk in the park"

We strive to look "normal"

As best we can manage

We keep up appearances

So you won't know the damage

The endless stream of symptoms 

That control our daily lives

Are beyond comprehension

And tough to survive

You could never imagine

The pain that we feel

But I can assure you

It's hellishly real

The worst is the doubting

Of family and friends

As to whether or not

They will stay till the end

To many desert us

In our time of need

So I've written this poem

As a warning to heed

Abandoning someone

Is morally wrong

Even when you think

That the person is strong

So don't turn your back

Or call us a fake

You will never understand

The sacrifices we make

Just getting out of bed

Is an endurance trial 

Some days walking a foot

Feels like a mile

Before you make assumptions

Based on what you can't see 

Imagine if it was you in pain

And the non-believer was me

Some illnesses are invisible

To the naked eye

Some victims lose their battles

Too many good people die

So think how you'd feel 

If the roles were reversed

And no one believed

Your invisible curse

Awareness is key

I'm spreading the word

May is our month

So stand up and be heard!

(May is Invisible Illness Awareness Month and in honor of that I wrote this poem...)

 

 

Anxiety Kills!

These last few months have been crazy busy and very stressful. Lots of doctors appointments with no new or helpful information, more labs with no definitive results, lots of new and distressing symptoms that are quickly becoming chronic, still no real diagnosis' and a ridiculously stressful SSD hearing for which I am currently awaiting the outcome. Combine these issues with all the normal ones that I deal with on a daily basis and you have the recipe for astronomical amounts of stress and anxiety! 

As most of you know, in addition to my chronic illnesses and pain, I suffer from clinical depression, anxiety and panic disorder so ANY additional stress makes me very ill.....physically and emotionally. These last few weeks have seemed abnormally difficult for me and I finally figured out that it is because of all the added stressers catching up with me. My body and brains reaction to this has made me very grumpy, sensitive and withdrawn. Last week, for the first time ever, my husband actually had to walk away from me because I was being such a bitch. I have never been so angry at myself as I was in that moment! I have always been able to maintain an even temper with Brian no matter what was going on but I have been under unimaginable stress and suffering from such horrible insomnia that I have lost the ability to control my emotions......I firmly believe that stress and anxiety kills!

Prior to all of this I had been making a concerted effort to be optimistic and find all the silver linings in my situation, so to speak, but then things got worse health wise as new symptoms started popping up and not going away.....it all went downhill from there. I find myself feeling worthless, useless and ignored. I continue to be dismissed by doctors, family and friends, I am in pain almost 24 hours a day, I rarely leave the house so I spend almost all of my time alone and the only time my phone rings is when a Dr or bill collector calls. Speaking of bill collectors, I am in debt up to my eyeballs due to medical bills so that is an added stress as well. All of this (and more) has caused me to sink back into a very deep depression. I HATE it when I get like this! I used to be a happy person but I honestly can't remember the last time I was genuinely happy. I would say ComicCon but even though I had an absolutely amazing time I was in so much pain from standing in lines and walking so much that I couldn't enjoy it completely. I can say that the closest I get is when I am with Brian and the kids! Brian has this amazing way of making me feel better and happier without even trying......just looking at my gorgeous husband makes my heart swell! I love him more than anything in this world and I can't even fathom my life without him or my kids! They are truly my only reason for being and the ONLY reason I suffer through this life every day!

So, now I just have to hurry up and wait. Waiting for the judges decision on my SSD, waiting for a Dr to finally come up with a diagnosis for me, waiting to maybe have just one day without pain.......I suck at waiting! Oh, and I have more tests ordered by my urologist this month to see what's wrong with my bladder.....more waiting, yay! I guess I just need that break I keep talking about....thank God Brian has a vacation next month so we can get out of town and relax.....I really need to relax!!

Thanks, as always, for reading and letting me vent! Until next time.......

You asked for it....Part Deux

After some conversations with fellow sufferers I decided to add an addendum to my last post regarding answers to health related questions from well meaning friends and/or family.

For those of us who suffer from chronic conditions that cause wide spread chronic pain life is hard on a good day. We have learned through trial and error what we are and are not capable of doing in our everyday lives and try to prevent as much of the pain as possible and even knowing that we tend to fail frequently and overdo things. Most days, even those days where we limit our activities to that which is absolutely necessary, we suffer from the kind of pain that would send most "normal" people to the ER! A lot of us made multiple trips to our local emergency rooms early on in our illnesses because we didn't know what our "new normal" was or how much pain is "too much". In my first two years I was admitted to the hospital three times, almost died twice and made so many trips to the ER that I lost count....I finally gave up when I realized that the pain was my new BFF and I just had to get used to it because there was nothing more that the Dr's could do for me! As it was my last two ER visits I was treated like a hypochondriac pill head and sent home with nothing more than an order to rest and to call my PCP for an appointment. Healthy people just don't get it! They have no way of comprehending what we go through 24/7, 365. It's not their fault either. Why would they understand? How could they? Even those people that have had family members or close friends with a chronic illness still have no way of truly understanding this kind of suffering. Only those that also suffer can ever really be "in the know"! It's like death, only those that have experienced the loss of a loved one can empathize with another that has had the same loss. 

I hate the thought of anyone else having to suffer this way but at the same time I am glad there are others like me because they are the ONLY ones that will ever be able to understand! It's nice to have people to talk to period but it's bliss to have people to talk to the know exactly where I am coming from and know exactly how I feel!!!!!

You asked for it!

So, a few days ago a curious aquaintence asked me the question that those of us with chronic invisible illnesses hate to try and answer: "What does it feel like to be sick on the inside but look healthy on the outside?" This question was followed by the usual "It must be so hard! I'm so sorry!" and "Does anyone ever accuse you of just being lazy or lying?" Then a friend of the aquaintence chimed in with "Well, if I were you I'd milk it for all it's worth! Bilke the system like all the other people collecting disability...." At this point in the conversation I was so angry that I had to walk away for fear I'd do or say something that I might regret later. I don't really mind the honest questions but when someone I barley know has the nerve to interject such an ignorant and hurtful accusation toward people on disability I lose my shit!!! Now, are there people out there collecting SSD that don't really need it? Yes there are. Are there people who lie on government paperwork in order to collect benefits to which they are not entitled? Yes. However given my almost two year battle with social security, even with the laundry list of legitimate medical conditions that I suffer from, I don't think there are quite as many "fakers" out there as one might think. Of course it's a completely unfair system so I could be totally wrong on that point but just because there are a few undeserving people collecting benefits out there doesn't make everyone on disability a liar or a fraud! That said, the liars and frauds are making it very difficult for those of us that truly need our benefits! We are made to fill out endless streams of paperwork, hire advocates and attorneys, get letters from our doctors and,in my case, present ourselves to a judge just to be believed at all. So, yes I've been accused of "faking it" and let me tell you something IT SUCKS!!! Now that I've sufficiently vented over that part of the conversation I want to focus on the legitimate question. So without further ado and with no holds barred here is the answer to "What is it like.......?"

Let me begin by stating the obvious.....being sick BLOWS! There's just no other way to say it. Worse still is when you feel like death on the inside but no one can see it! That's where all the questions come from isn't it? That's when the accusations start flying because no one can see the agony. There aren't any cuts or bruises to make the pain visible to the naked eye. It's not like we wear the obvious signs that say "Caution Sick Person Inside"....although I have considered getting a tattoo that says just that....

I've been trying to come up with a way to explain it so people can at least get an idea of what it feels like and here's what I've come up with so far: You know how you feel when you're coming down with the flu? Not allergies, not a cold...the flu. That unrelenting ache in every muscle in your body, the feeling that all your bones are breaking all at once, the obnoxious fluctuating fever that drains every drop of your energy, the headache that makes your eyes feel like they are going to pop out of your skull, the horrific fatigue that makes even getting up to go to the bathroom virtually impossible? Now, imagine those symptoms then multiply and magnify them. Then imagine them persisting beyond their usual 3-5 days, try to imagine that you have these symptoms 24 hours a day, 7 days a week for weeks or even months at a time. That is how I feel! I have had those "flu" symptoms 24/7 for the better part of the last two years! They come in waves or as my Dr calls it "flares". One of my flares last year went on for almost exactly 3 months. The aches and fatigue NEVER go away but the fevers, headaches and "breaking bones" only seem to happen when I'm in a full blown flare. Do you have a better grasp on how it feels now? Let's go a step further. Take all the "flu symptoms" I described and add blurred vision, irritable bowel syndrome, restless leg syndrome (it feels like bugs crawling up and down your legs UNDER the skin..), migraine headaches, muscle spasms, limb weakness, difficulty swallowing, dry mouth/eyes/nose and photosensitivity/sun rash. Sound like fun yet? Nope, not done! Now add Dysthymic Disorder, Generalized Anxiety Disorder, Panic Disorder W/ Agoraphobia and Major Depressive Disorder!! This is what it feels like on the inside yet I look completely normal on the outside. It's sad, scary and frustrating to say the least! To literally feel like your dying a slow agonizing death but no one can see it and no one believes you....

I am sorry to be so depressing but if you don't want to know then don't ask because I am done sugar coating things! I am done trying to make everyone else feel better! I am sick, I hurt and I just want people to understand......so feel free to ask as many questions as you want but please remember to not judge and most importantly remember....You asked for it!!!

Something's Gotta Give!!

I need something to change! I need my life to go back to the way it used to be! I want to be happy again, I want to be able to work again, I want to feel something other than pain, I want to be healthy again.......I just need a break dammit! Is that too much to ask for?!? Is it??!

When I say "break" I don't mean a vacation, although that would be nice....somewhere tropical and warm where I can sit on a beach chair with a drink and just listen to the ocean. Where I can hold my gorgeous husbands hand and walk barefoot in the surf while watching a perfect sunset. Yes, that would be very nice but that's not what I'm talking about.......I need a break from the Hell that my life has turned into! My physical and mental health has become too much for me to handle. I can't do anything anymore without having to consider how it will make me feel later, I can't make plans because I have no idea if I'll even be able to get off the couch that day and I don't want to disappoint anyone by canceling at the last minute.....I am only 34 years old and I shouldn't have to think about these things!! I shouldn't have to feel like this!!! I shouldn't have to blog at 1am or post statuses on Facebook about being sick just to be able to "talk".......I am to damn young for this! I can't even keep up with my beautiful kids anymore and then they ask me why I can't do the things I used to do with them and my heart breaks even more!! They are so wonderful about it but I know they don't really understand and I don't want them to resent me later because they think I am lazy or that I don't love them. I love them more than my own life and I wouldn't have survived this long without them but I see the disappointment in their eyes and then I think that maybe they would be better off without me! Then there's my amazing husband.....he has the most beautiful soul! He has been my rock and my best friend through all of this but I can't help feeling like I am bringing him down....when he signed our marriage license he didn't sign on for a sick wife! I know he meant all of his vows, including

the "in sickness and in health" part, but at our age you never think that will apply until much, much later. That said, if the roles were reversed and he was the sick spouse I would be by his side every second just as he is for me! You might be thinking "why do you feel bad if you would do the same for him?", well, I feel bad because I just don't feel like I am a good wife! The wife is expected to keep up the house, take care of the kids, do the laundry, make dinner and, in this day and age, help contribute to the family finances.....that may sound old fashioned but when I was healthy I could do it all with energy to spare and I was so proud of that! I was a good wife and mother, a good housekeeper, a good cook and a good employee at my full time job! Now if I need to do any housework I have to pick the most important task on the list and I am lucky if I have enough energy to complete that one thing. If I push myself to do more than that I will spend the next day or two in bed trying to recover from whatever I overdid it on.....it's pathetic and I am sick of it!!!! 

In addition to all of that I am lonely! Like I said, it's pretty sad that I have to blog and post FB statuses just to be heard. All my friends have jobs, lives and families to deal with.....they don't need my shit on top of it, nor do they WANT to deal with my never ending saga! I can't say that I blame them... I don't want to deal with it either! I'd be lying if I said that I have never considered giving up. I have considered it, many times, but if there is one good thing I have learned about myself in all of this is that I am NOT a coward....In fact I think I am pretty damn brave! I have lived through things in the last three years that most people will never have to live through in their entire lives and I'M STILL HERE!! 

I am just having a really hard time accepting what is happening to me! I have an even harder time believing that anyone else can accept it either.....I just want to feel ok again.....Something's gotta give or I'm gonna go crazy!! Assuming I haven't already gone crazy already that is.......

My Selfishness Knows No Bounds.....

Do you ever feel like nobody really cares? Like your friends and family have given up on you because chronic illness has "changed" you and you can't be the happy-go-lucky, fun person that you used to be? Have you ever noticed that certain people will post a complaint or issue on social media, even the most trivial of things, and they get all the support and attention in the world,  BUT, when YOU post something you're lucky to get a *HUGS* or a  :-( and most of those come from people you barely know?

Make no mistake, I don't want to make anyone feel guilty or point fingers at anyone in particular. This isn't about any one person, this isn't even just about me. I have spent many years on various social media sites and have observed this inequality in support for many people during that time. That said, I can only truthfully speak for myself and I just need to get this out there.....bring on the selfish commentary:

Almost three years ago I got really sick. I literally almost died! I still suffer everyday and due to more recent diagnosis' I will continue to suffer for the rest of my life, but when this all started I had multiple hospital stays including an eight day stay in the ICU where I was in critical condition for a decent chunk of it, was not allowed to eat or drink anything for 6 days, had 6+  procedures and surgeries and was not allowed to move AT ALL without a nurses help. It was hands down the most terrifying week of my entire life (so far) and I thank God everyday that I have my husband by my side through all of it and that I am still alive!  But, when it all went down I felt completely alone, and if I am being completely honest, forgotten! I received a few well wishing Facebook messages, a couple of phone calls and very few visitors. The visitors I did have were a couple of my very best friends and some very special people that I haven't known for long but have become very close friends in a short amount of time. Part of that was probably my own fault, I tend to downplay things and try to avoid excess attention because I HATE pity and don't want to make people uncomfortable or inconvenienced! It just seems like when some of the friends have a crisis or end up in the hospital, EVERYONE rallies around them and will drop everything to be there for them! They jump on Facebook to "rally the troops", they start prayer chains, they send texts to everyone they know and then some.....which is not a bad thing by any means.......we NEED to be there for each other, we NEED to show solidarity and support! I just wish that I could have experienced that kind of support when I needed it the most!

See what I mean about selfish? I am such a terrible person, but I can't help how I feel. After many years of observation I feel like there are certain individuals or situations that are guaranteed the attention of our group of friends and family, no matter what, but what about when I was (and still am...) going through my own personal Hell? I was scared to death, I felt like my breaths were numbered (which for a day they almost were...I was told by my surgeon that there was a touch-and-go day where I had a 15% chance of survival, but he didn't want to tell Brian or I at the time because he felt it would've done more damage than good.), I prayed everyday that I wasn't ready to leave this world and for God to give me just a little more time! Most days I spent alone because, even though he fought me on it every step of the way, I forced Brian to go home, sleep, take care of the kids and the dogs and go to work. I never told him, but every time he walked out of that hospital room door I was terrified that it would be the last time I would see him. When he was there I held his hand, memorized the feel of his skin, his face, his smell...everything about him, just in case! I have never felt fear like that in my life, but I hid it from everyone! I planted a smile on my face and kept everything as light as possible for everyone else's benefit. I got really good a faking my emotions...no one would have ever known how scared I really was.....most people still don't know!

I have watched as others have gone through crisis after crisis, some of their own making, and yet everyone still rallies around them like they are the only person in the world. Then when someone like me NEEDS a little encouragement or sympathy they are virtually ignored! I understand that people have lives and obligations that take up most of their time but when you see a friend getting love and support from people that you have called "friends" for the better part of 20 years and then you need that same love and support and those "friends" are nowhere to be found.... it becomes saddening and maddening at the same time!

I do have a few friends and family that have stuck with me through all of this and I love them for it! I want to give a special shout-out to my hubby, my kids, my Grandma, my Wifey and my Sister....without you guys I wouldn't have survived the last three years and I wouldn't be able to survive my now uncertain future!! I love you forever and I will always be here for you as you have been here for me!

I want to reiterate that I did not write this to make ANYONE feel guilty! I just needed to get these thoughts and feelings out of my head.....However..........

Best Day Ever!!!!

So I just had the best day and thought I would share since most of my posts are about my ever deteriorating health and are very somber in nature. I guess I figured it was time for something fun and happy!! I also don't want to forget a moment of it so here we go.....

Today (01/25/2014) was the Wizard World Portland Comic Con. After only getting 3-4 hours of sleep I was exhausted but excited since I have been waiting the better part of a year for this day!! Brian and I took off around 10am and headed for the Convention Center in Portland. After spending almost an hour looking for a parking spot and another half hour or so in line to get in, I headed straight for Norman Reedus' line as I knew from last years Con his would be the longest. I was right! During the two and a half hours waiting to get his autograph I made friends with the adorable 18 year old twin girls in front of me. We chatted about Norman (of course) and the other celebs we wanted to meet. As we got closer to the big moment the girls were getting so excited and nervous that I thought they both might faint...lol! Fangirling at its best! When the line wrapped around to just the right spot they were taking selfies with their backs to Norman so he would be in the pictures....during one of many shots he managed to photobomb them, throwing peace signs and his signature smile!! Both girls immediately started texting everyone they knew and posting it as their profile pic on every social media site they had....it was the cutest thing I ever saw! When I got to Norman he was still smiling from his encounter with the twins. We chatted for a second while he signed my photo op pic from last year and hugged me TWICE.....I even managed to sneak a kiss on his cheek ;-) Made my day!! After leaving Norman, which was SO hard to do btw, I went over to meet Robert Englund. Yes, that's right, Freddy Krueger himself!!! Let me tell you, he is the NICEST person ever! I asked him if he was having fun in Portland and he proceeded to tell me a 5+ minute story about visiting Portland when he was a kid, staying in the same hotel he was in this weekend AND that he had gone to a local pub last night and got hit on by much younger women...LOL! We ended our encounter with a hug and a kiss on the cheek! What a dream come true! ANOES is my favorite horror movie franchise ever and to have this new memory to add to that is priceless! After Robert it was time for a much needed break since my leg was screaming at me. A little while later we headed back inside and I went straight for my SOA boys. Kim Coates (Tig-SOA) was first and he was an absolute delight! We stood there for a few minutes and talked about SOA and where the show is headed in it's 7th and final *sad* season. He kept calling me sweetie, babe and darlin' and hugged me three times! He also signed my picture with a very personal message about liking my name :-) As I headed to the next booth to meet Ron Perlman he called out "Love ya!" and while I was in Ron's line Kim headed out for a break so I called out "Love ya Kim!" and he turned, looked me right in the eye and said "I love you too sweetheart! See ya later!" I know he probably says the same stuff to all his female fans but for just that moment he made ME feel special and I will carry that with me forever!! ***If you ever stumble onto this blog Kim I just want to say thank you for those very special moments and I love ya!!*** When I finally got to Ron he was everything I expected. Kind and gentle but with a commanding presence that any fan of SOA knows well in his portrayal of Clay Morrow. We chatted for a minute while he signed my picture and then he allowed me to take a photo of him with my phone, which he wasn't generally allowing, so that made me feel special! I basically begged him, but it worked.......When it came to my final meeting I had to make a choice. Did I want to go hang with Michael Rooker again like last year or did I want to meet someone new? I chose the latter and boy am I glad I did because I pretty much got a twofer! I decided to meet Jon Bernthal (Shane-TWD) and what a sweetie he is! He signed my picture, called me sweet names and was including free posed pics with his autographs (as long as you brought a camera or phone with you!). While he was signing the pic I'd selected Laurie Holden (Andrea-TWD, her booth was right next to his.) popped her head through the curtain to talk to Jon. She kept looking my way so I said "Hi gorgeous!" To which she replied "You are so sweet! Thank you!" so I went for it and asked her if I could steal a hug.....she stepped through the curtain, hugged me and reiterated how I was "so sweet".....the only thing that could've been better is if Brian had been ready with the camera to catch this rare moment, but he did see it happen so that's good enough for me, as is the lifelong memory I have! Meeting Jon and Laurie was amazing but it also included the funniest moment of the day. When Laurie popped her head through the curtain Jon asked if she had any ibuprofen or Aleve. I told him I had some Tylenol and asked him if he had a headache. He then proceeded to tell me "It's too much alcohol, damn Norman Reedus!". We started laughing and I asked if they had gone out last night, he said "Yeah......" and mumbled some curses under his breath. Jon, Laurie and I were all laughing at this point as was most of the line behind me. Then we took our photo, hugged again and I went on my merry way!

Talk about the Best Day Ever!! There were a few other people I would have liked to have met and gotten autographs from but, honestly, I ran out of my allotted "Con $$" and I had gotten all the people I knew I couldn't live without so no regrets! I can't wait till next year!!!!! Brian and I are thinking about doing some Cosplay next time so we have some planning to do and costumes to make between now and then.....I'm already excited!! 

Well, that's all for today and I will try to post some pictures soon! I hope this post found you in good health and enjoying your weekends :-) Brian and I are headed to Florence tomorrow for a much needed overnight and then I have surgery on Tuesday so I might not post for a bit. My love to you all!! XOXO

When do you just give up?

Hello readers! I hope this post finds you all enjoying 2014 and in good health...

I am not doing much better myself but I have a few good things coming up so we'll start with those:

This weekend I'll be heading up to Portland to attend Wizard World ComiCon for the second year in a row! I'll be meeting Norman Reedus (Daryl, TWD), Michael Rooker (Merle, TWD), Robert Englund (the iconic Freddy Krueger), Ron Perlman (Clay, SOA) and Kim Coates (Tig, SOA). I am really excited to have this experience again!! Then on Sunday my hubby and I are headed to Florence for an overnight at Three Rivers Casino/Resort. I love this hotel/casino...it's beautiful, fun and has great food! This fabulous weekend couldn't come at a better time as I am scheduled for surgery on my tailbone (again!!) on the 28th. I am hoping that this time it fixes the problem but I am not holding my breath. Later in the year my hubby and I are hoping to get down to San Fran to visit my cousin and then maybe Vegas in August! The final piece of good news is that I finally have a hearing scheduled for my SSD! I head down to Eugene April 15th so the ALJ can hear my case and hopefully rule in my favor! After my surgery I will be working on getting copies of all my medical records and prepping my case. I won't lie, I am very nervous, but I know that my chances are much better this way and I am optimistic that this will all be over soon and end favorably! 

Now that we've covered the good stuff it's on to the meatier stuff. Regrettably all is not well on the health front! My pain levels are getting worse by the week and I have no real explanations. As I write this I am laying on my heating pad trying not to cry because my spine feels like it's being ripped apart. At this point my Dr is still leaning toward Lupus (or a related autoimmune disease) but we are no closer to an actual diagnosis because the bloodwork keeps volleying back and forth which is common but very frustrating! I have made some progress in therapy for the panic attacks but my depression and general anxiety are off the charts most days and my insurance will only pay for one more visit with my Phycologist. On top of this I have been stressed out over situations some of my friends are going through.... I am, by nature, a helper and I want to be able to help everyone with their issues but, honestly, I barely have enough energy to work on my own problems anymore! The mere fact that I can't help in any meaningful way makes me feel even worse. I love my friends with all of my heart and what hurts them hurts me! Then there are those "fair weather friends" I've mentioned before....I've tried to reach out over the last few months but nothing has changed. So that brings me to my question. When is it time to give up? When is it ok to tell someone that enough is enough when they aren't there for you when you need them and worse, you find out they've been gossiping about you behind your back? Where does one draw the proverbial "line in the sand"? I am not a confrontational person but I am also not one to shy away from it when necessary. I have had to fight the impulse in recent weeks to call a few people out on their BS and the only reason I haven't is because I loathe drama with a fiery passion and I know that the only possible result of voicing my opinion would be generating loads of it! So here I sit, biting my tongue until it bleeds, waiting for a resolution that will never come on its own. The longer I wait to confront the situation the more anger and resentment builds up in my soul until one of these days I will just explode! My biggest fear is I will explode on the wrong person, a person that doesn't deserve it but had the misfortune of saying the wrong thing at the wrong moment and.......BOOM!!! 

As you can see I have a lot to work through and a lot of soul searching that needs to be done. I've been working with my therapist on many of these issues but I still have a long way to go! More than anything I need to learn to let things go and move forward but that's easier said than done. At this moment all I really want is a diagnosis and to win my SSD case so I can contribute financially for my family.....If I could just have those two things my stress levels would go down exponentially! 

Well, thanks for reading!! Until next time.....